Awareness of post exertional malaise is so key to preventing harm and yet we are still seeing obvious ignorance from medical professionals, or missed opportunities to spread the word when prominent figures are given a platform. /1

Patient example in our inbox today: #LongCovid since March. Advice to stop-rest-pace from #pwME led to stabilised symptoms. HR Monitoring allowed yoga & small walks. (Learn more here: https://www.physiosforme.com/heart-rate-monitoring) /2

Consultant told patient it’s been 10 months and it’s time to “get back on your feet”. Referred to LC rehab. Reassured they’d seen some people with PEM and would go extra slow. Rehab programme described as "very gentle GET". /3

Exercises in program included: “sit to stand, air punches, step ups, shoulder raises, marching on spot etc…the physio told me I’d never get fitter deliberately keeping my heart rate low.” /4

The day after assessment; “I woke up and felt like I’ve been poisoned. I’m so tired, my body feels like it’s buzzing, my throat hurts, my glands are swollen. I’ve been in bed all day.” This is Post Exertional Malaise ( https://meassociation.org.uk/wp-content/uploads/MEA-Research-Review-Assessing-PEM-in-MECFS-25.03.19.pdf) /5

The patient knew they were suffering with PEM, but told us: “I’m really worried that if I don’t participate, my consultant will think I didn’t try.”

We've heard this so much from #pwme too. Patients labelled as "unmotivated" & "non-compliant" and D/C without further thought. /6

Our advice: 1) REST to recover from this PEM episode.
2) Resume pacing. It was working well. Get back on track.
3) The program was obviously cardiac rehab and wholly inappropriate for someone with PEM. We would not recommend continuing. /7

This is just one example of many that we are receiving every week. This is why we continue to badger, prompt, poke and object whenever PEM is overlooked in academia, research & the media. It is not good enough to ignore it. Avoidable patient harm is happening. /End